My last post 2 years ago about dating with health issues got quite a bit of attention (thank you reddit so much for the moral support and great advice, it really helped me feel less alone!)

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I was in two minds about whether to post an update here or not, but I know that when I was all cut up about my invisible illness affecting my dating life it was really hard to find success stories where people met their partners AFTER diagnosis. So I’m posting it just in case even one person in a similar situation gets the moral boost they need.

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2 years ago I was really struggling with both my mental and physical health. They both spiralled off each other (as invisible illnesses tend to do, unfortunately) and it was really hard for me to improve the home life situation that was definitely not helping matters. I love my grandparents to bits, and I’m very grateful for all the care they provided, but living in an isolated town in the middle of nowhere with only them for company made it very difficult to meet new people or do the few activities I’m still able to do.

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Moving to somewhere bigger and with a population closer to my age has definitely been a big factor in improved dating success. It sounds obvious, I know, but it’s not an easy thing to uproot when you’re disabled. But if you’re isolated and find it hard to meet people because there’s nothing to get out the house for, it’s such a boost in quality of life. Now there are places to go and do things/meet new people. There are actually people my own age there to meet!

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Meeting people in person also made it easier to have that conversation about my health more organically and casually; preferably after they’ve got to chat with me and know me a bit first too. Online dating works for some people, sure, but I think it’s way less stressful getting to know someone as a friend first and hang out in person without pressure instead of meeting up with a stranger and wondering whether you’ll even want to sit through the whole date (and stress is of course a health trigger). I know I certainly didn’t have the energy needed to sift through the numbers game that is online dating – I know some single friends who would have one good date for every ten or so dates through apps.

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I met my current boyfriend at a board games café. Somewhere I could get out, but that wasn’t too taxing (sitting down is a lot less taxing on my pain and fatigue than active sports for example). We got chatting, became friends pretty quickly. He was super oblivious to all my definitely-not-subtle flirting attempts, so at first I figured he just wasn’t interested (especially as he knew about my fibro). Turns out he was just very shy and not wanting to misread anything.

​

We’ve talked about my health and he knows he can ask my any questions he wants about it. But honestly, he’s been really amazing and understanding about it in a way I never thought anyone would be. He pre-empts issues before they even have a chance to come up (noticing if the heating turns off too early and grabbing a blanket because he knows the cold makes me worse) and mentally plans out our time together around “Well if we do this on that day, we’ll have a chill day in the next day because you’ll be exhausted”.

​

It’s still relatively early days, but I wanted to let fellow spoonies know that there are people out there who don’t freak out at health conditions. There are so many support groups and articles online from the perspective of dating/married life when you’re already together and get the diagnosis, so someone’s already invested and supportive. The amount of times I’ve heard “I don’t know how I’d cope without my partner” has been so demoralising as a single person who struggled to find anyone.

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So, for anyone who’s going through a hard time right now with their health, or struggling with being single – don’t give up! Do everything you can to create opportunities for you to meet new people, or even just leave the house with friends and ask them to invite some of their friends you haven’t met yet. It’s scary, yes, and it might be a narrower scope on what you’re physically able to leave the house and do, but even something low key like going to the library, a café, a book club, etc is a good place to start.

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Tl;dr: After struggling with dating since my diagnosis of fibromyalgia, I’ve successfully been in a relationship for a couple of months now and am super happy about it!

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Edit: Wow, this blew up so much more than I expected! I'm happy it's made an impact on so many people though, I'm getting so many lovely comments and messages :) I also got my first ever Reddit Gold, so thank you to whoever gifted that!

I was in two minds about whether to post an update here or not, but I know that when I was all cut up about my invisible illness affecting my dating life it was really hard to find success stories where people met their partners AFTER diagnosis. So I’m posting it just in case even one person in a similar situation gets the moral boost they need.

2 years ago I was really struggling with both my mental and physical health. They both spiralled off each other (as invisible illnesses tend to do, unfortunately) and it was really hard for me to improve the home life situation that was definitely not helping matters. I love my grandparents to bits, and I’m very grateful for all the care they provided, but living in an isolated town in the middle of nowhere with only them for company made it very difficult to meet new people or do the few activities I’m still able to do.

Meeting people in person also made it easier to have that conversation about my health more organically and casually; preferably after they’ve got to chat with me and know me a bit first too. Online dating works for some people, sure, but I think it’s way less stressful getting to know someone as a friend first and hang out in person without pressure instead of meeting up with a stranger and wondering whether you’ll even want to sit through the whole date (and stress is of course a health trigger). I know I certainly didn’t have the energy needed to sift through the numbers game that is online dating – I know some single friends who would have one good date for every ten or so dates through apps.

I met my current boyfriend at a board games café. Somewhere I could get out, but that wasn’t too taxing (sitting down is a lot less taxing on my pain and fatigue than active sports for example). We got chatting, became friends pretty quickly. He was super oblivious to all my definitely-not-subtle flirting attempts, so at first I figured he just wasn’t interested (especially as he knew about my fibro). Turns out he was just very shy and not wanting to misread anything.

We’ve talked about my health and he knows he can ask my any questions he wants about it. But honestly, he’s been really amazing and understanding about it in a way I never thought anyone would be. He pre-empts issues before they even have a chance to come up (noticing if the heating turns off too early and grabbing a blanket because he knows the cold makes me worse) and mentally plans out our time together around “Well if we do this on that day, we’ll have a chill day in the next day because you’ll be exhausted”.

It’s still relatively early days, but I wanted to let fellow spoonies know that there are people out there who don’t freak out at health conditions. There are so many support groups and articles online from the perspective of dating/married life when you’re already together and get the diagnosis, so someone’s already invested and supportive. The amount of times I’ve heard “I don’t know how I’d cope without my partner” has been so demoralising as a single person who struggled to find anyone.

So, for anyone who’s going through a hard time right now with their health, or struggling with being single – don’t give up! Do everything you can to create opportunities for you to meet new people, or even just leave the house with friends and ask them to invite some of their friends you haven’t met yet. It’s scary, yes, and it might be a narrower scope on what you’re physically able to leave the house and do, but even something low key like going to the library, a café, a book club, etc is a good place to start.

Tl;dr: After struggling with dating since my diagnosis of fibromyalgia, I’ve successfully been in a relationship for a couple of months now and am super happy about it!

annshine 493

I really like this post. You seem to be in a much better place now and with so much life to live and do. Good for you :)

Claefer 207

Thank you! I'm definitely in a better place now (the move made SO much difference) and while it's not a miracle cure, it's made a lot of aspects of my life better now. I know it was a long time ago that I originally posted, but I know I love seeing positive updates of other posts, so I figured I'd share mine :)

lavender_tck 129

This is such a positive update. Thank you so much for sharing! Your bf sounds sweet and I hope things continue to go well for you two. I'm so happy for you!

Claefer 56

Thank you so much! He is incredibly sweet and things are going really well. Your kind words mean so much :)

neon-bible 84

Thanks for the update! I have fibro too so I love hearing success stories.

Claefer 46

Thank you so much! I know how heartening it can be to hear the success stories (especially for single spoonies who feel the whole situation's a bit hopeless), so I wanted to post mine.

prettylady1121 80

I was super worried to tell my SO at first but quickly realized honesty is the best policy. I have lupus/ra/fibromyalgia and am so lucky to have him by my side. I never wanted to be treated as a sick person, which previously happened but needed extra support during bad times. My now fiancé has a good mixture of treating me like a normal person but is so caring and helpful when needed.

We’re getting married in 39 days! Best of luck to you and your SO.

xshawtyschroniclesx 13

Ayyy Congrats to you pretty lady

pineapplecatexpress 47

I alos have Fibro(and Lupus, Sjogren's, and RA) girl I feel you. I'm so happy you found someone who takes everything into consideration. I dated a guy whose mom had Lupus and we broke up because he thought that taking care of me when I had flares meant I needed to do his laundry and cleaning his apartment for him. I've been with a guy for 3 years now who didn't know what Lupus was when we met and he really looks out for me when I get sick. The good ones are out there :)

Claefer 31

Yikes, I'm glad you're long out of that first relationship! It's amazing the kind of mental gymnastics some people do in deciding someone disabled ought to become their personal cleaner >.<

I'm so happy that you're with someone long term much better! I know my guy hadn't heard of fibromyalgia before meeting me, but I think sometimes learning a condition from scratch is nicer because they listen to you rather than any biases or assumptions (especially with conditions on a massive spectrum of severity).

llamamama03 38

My husband has fibro. I’ll tell you from the other side, it sounds like you’ve got a good one! I do similar things for my hubby.

It's amazing how much help a supportive partner can be! Thanks so much for the lovely words, gentle hugs to you too :) Winter is rough as always with the cold, but I'm wrapping up warm! Your husband is really lucky to have such a considerate wife :)

lochsleigh 28 S

I have Fibromyalgia and almost every spinal problem you can think of and arthritis Everywhere! I live in an area of the country where the weather changes constantly. The barometric pressure changes kill me, as I'm sure many of you can understand and relate to. I also have clinical depression and generalized anxiety. Don't I sound like somebody you'd want to be with?
But I'm blessed and lucky beyond belief. I've been with my fiance for over 7 years now and he checks the weather to let me know when fronts are going to be moving through, he does just about anything I ask of him, and he constantly asks me what can he do for me. Especially when I'm having a really bad day.
We met online, took things really slow getting to know each other and honestly, I didn't think he liked me as anything more than maybe a friend. (Apparently I'm really dense when it comes to realizing that someone actually likes me ... But hey, he put a ring on it over a year ago!) ;)
There ARE good people out there. That special person for you will love you for you - faults, flaws, and all. I had all of these issues before I met him. Some ex's think I'm "too high maintenance". My fiance doesn't. He gets that I'm not "normal". He's amazing and I know I could live on my own but it really is wonderful to be with someone who gets it. He never doubts my pain even though he can't see it. He never makes me feel less than for all of my "problems". It's amazing to be with him. Period.
I lost all of my "friends" over the years from backing out of plans at the last minute so many times. But it's hard to plan in advance because you never know what your day is going to look like when you wake up in the morning. As much as I miss having my group of friends to hang out with, I'd rather not be around people who simply cannot grasp what my life is like and be understanding about it. I miss them but I don't miss the negativity from them. And in that way, I'm much better off.

Tldr: don't give up hope. There are people out there who understand and care.

Claefer 14

This is such a beautiful read, I completely agree. Being with someone who doesn't dismiss or minimise your pain just because they can't see it is absolutely incredible! I'm trying to cut the people who do this out of my life (friends and family. Some are well meaning but ignorant, others deliberately callous), because it makes such a difference to my mental health to be around people who support you instead of doubt you.

I'm really happy you have such a wonderful fiance!

Fml379 2

I have ME/CFS and have noticed that I get worse when the seasons change and I think grey days make me generally worse. How do you know about fronts and pressure and so on and what to look out for? I'd like to be able to figure out if it's something I've done that's triggered a crash or if it's weather related.

lochsleigh 1

The barometric pressure always changes when a front moves through. Any time there's a difference in temperatures, especially if it's going to be significantly colder or storm a lot, the barometric pressure is going to shift. Just check your local forecast on a regular basis.

arika_ito 26

Hey! I wasn't around for your last post but congratulations!!! I have a couple of friends who have fibro and they've definitely told me how nice it is to find people, not just significant others, who understand how it is for you. Best wishes and I hope your relationship continues.

PM_ME_YOUR_KINKAJUS 15

As someone with a whole host of issues that will ultimately lead to my death before a partner, I was in a very similar spot. I did find the most incredible, kind, gentle, caring and loving human I could possible hope for. We got married this September in Iceland.

Claefer 5

That's so moving! I'm so glad you found that joy and love in such an awful situation.

Haterophobe 12

he was just shy and not wanting to misread anything

I feel personally attacked.

On a more serious note, OP, I remember your original post quite vividly. My invisibilities (heh) aren't nearly so frustrating to deal with, but I was inspired by your persistence and got over some of my own hold-ups that were sourced from health problems. I'm super happy to see an update and see that you're doing well :)

Claefer 10

Haha, I tease him about it all the time. He's a lot less shy now!

I figured most people wouldn't remember my original post, but I'm so glad it resonated with you and helped even a little. It's difficult to keep pushing forwards sometimes, but I'm determined to keep at it where I can, and if I can do anything to help give some hope or advice to people who are in a similar situation that I was, I always want to help!

Thanks so much for your kind words, they really mean a lot :) I hope that you're doing well too, it certainly sounds like you've made a lot of personal progress too!

Haterophobe 6

I've made more progress than I ever thought I would. Not to distract from the OP, but I figure you might appreciate mt story :p

I have monaural hearing - full hearing in left ear, total loss of hearing in right ear - which is kind of awkward at times (only have an earbud in left ear, someone trying to talk to me in my right haha) but I get by decently. I had never really been a very assertive person, and I tended to just let people do their things and I'd figure out what I needed to do in response.

After reading your post, I was kind of stuck. I'm not often introduced to people with more serious medical issues, but your post essentially boiled down to - for me, anyways - a total lack of regard for the shit your body puts you through, and I had never seen that in anyone before. Like the idea of just giving up had never seriously crossed your mind :)

So I stopped giving up on myself and my hearing. I started actively asking people to repeat themselves, and speak up, and walking over to people to interact with them. It might seem small to some, but I imagine you can understand how weird it might be to do all the little things differently when you're trying to spite your awful body for being awful and problematic.

So yea, no major changes for me, and while that one hot dude isn't any closer to being my boyfriend (stupid straight people, am I right?) we'll probably be roommates in college and we're planning on taking a bunch of community college courses together while in high school before transferring. Probably have happened if I hadn't read your post :)

Claefer 8

It's so nice to hear your story! Thank you so much for sharing it :)

It's really difficult to start pushing yourself out of your comfort zone when it comes to health things - especially when you want to avoid social stigma. But I think you absolutely did the right thing! Pushing through that initial "Argh, this is so hard and I hate this" stage is so helpful in the long run, and you do get more used to it.

I've definitely had low parts where I wanted to just give up and throw in the towel, but I think the most important thing is that I kept going anyway. Even with pauses in between being able to do things, doing what you can when you can is important. Small things differently is a massive part of that :)

Small changes are just as important as the big changes sometimes! I think you've been doing a great job! That's seriously heartwarming and incredible though. College is such a milestone and I hope you find so many more opportunities through it (hot straight guys be damned, you will find so many more dating opportunities in college).

I'm just so touched that my post could help at all :) I'm so glad it did!

BalancetheMirror 2

he was just shy and not wanting to misread anything

I feel personally attacked.

I lawled.

Pawneewafflesarelife 10

Awesome update and I'm so happy for you! I have nerve damage. My fiance is amazing at helping me when I have days I hurt too much to be useful. Sometimes I worry he will find it too exhausting and I warn him that I'll never get "better" fully and he just replies, "The only frustrating part is when I feel like I can't do anything to help." So, we focus on finding ways he can assist me and help me manage stuff (even as simple as taking a walk for strength building or standing outside the shower if I'm weak and wobbly), and we both are happier because we feel empowered and proactive! I think finding ways to exert some control over your condition helps so much with the helpless feeling and with mental health. It's a bit scary to admit where you're weak and to rely on someone else, but our relationship is all about teamwork, so we find ways for me to help him as well, which also helps me feel empowered and useful. :)

Claefer 5

This really warmed my heart :) I know exactly what you mean about wanting to make sure they realise it's not going to magically get better, but it can really help you meet your maximum potential when you have someone helping you out! I'm so, so happy to hear about you and your fiance, it sounds like such a beautiful relationship :)

Pawneewafflesarelife 5

Thanks. Posts like yours are great - they remind us that shit isn't irredeemably awful just because we got dealt a crap hand. Just texted my fiance to say that I love and appreciate him. Thank you for sharing and reminding me to notice the small awesome stuff.

lochsleigh 2

We've found that taking a shower TOGETHER is also helpful when I just have no energy. Seriously, sometimes it feels like it takes so much effort to wash my hair. I've even gone so far as to cut it from pretty long once to really short thinking it would help. It really didn't. But it's relaxing for him to wash my hair for me in the shower, especially when I just can't seem to do it. And it's intimate and brings a sense of closeness that's really nice. So maybe next time, have him INSIDE the shower instead of waiting for you outside of the shower. ;)

Pawneewafflesarelife 1

Oh, yeah, we do that too, sometimes. It's very intimate and romantic and helpful!

lochsleigh 10

His mother says she doesn't believe fibromyalgia is "a real thing", that it's all in people's heads. For years that made me so angry. Now, I just don't care what she says or thinks. She doesn't pay my bills and I'm a grown woman. I'm not intimidated by her and I hold my own with her. I don't know if it's because her son and I have been together for so long now or if she's mellowing out as she gets older or if maybe by not cowering to her, I've earned some respect - but she's not as mean towards me as she used to be.

Claefer 12

My mum doesn't believe it's a real thing either. She'll outright say "doctors don't know everything". They know a damn sight more than her, that's for sure! I think her attitude towards my health made my worries about what others would think worse, because of the whole "mothers love unconditionally" - if she didn't believe me, who would?

Thankfully I'm older and wiser and can realise that's a load of shit! I'm sure he's very glad that you support him so strongly and don't take any of her crap. It's one thing to ignore that kind of person, but it's so much easier when someone is actively advocating on your side of things.

lochsleigh 5

We stand up for each other. :)

tootthatthingupmami 3

A lot of pain is mental, maybe that's what your mom is thinking? Because fibromyalgia is chronic pain right?

Claefer 1

Oh, she's just generally horrible to me. She's outright said she doesn't care what the doctors say, she knows best and that I'm just putting it on for attention.

She's also made it clear she wouldn't take me in if I became homeless (which is why I was living with my grandparents before) and has told me I was pathetic and "everyone gets sad, you aren't special" when I confessed to her at 23 that all these health issues paired with depression was making me suicidal.

She's textbook narcissistic parent.

tootthatthingupmami 4

Ugh. She sounds like a sad , sad, person. I'm sorry you have to hear those things from your mom :(

Claefer 2

Thank you, I really appreciate that. It definitely helped once I moved out of that house! I think her attitude made me think I'd hear that stuff from more people (and especially in relationships where they really get to know you), so it's been such a relief to feel like that's wrong and I deserve to be treated better than that (it's easy to know better, but not always to feel that way)

AnonymousFruitSnack 5

I relate to this way too much. My parents try to be supportive of my issues but mainly they just make me feel like I’m not doing enough, or like I’m “giving in” to my illnesses. For years before diagnosis, it was just “oh you’re just tired. Everyone gets tired” “You’re just stiff from sitting” “it’s just because you’re sad that you hurt.” “You just have to calm down and deal with it, everyone has issues.” Even to this day my father doesn’t know what half my diagnoses are or how they effect me, meanwhile my mom thinks that she knows all there is to know about them and tells me I can’t be feeling this or that way because that’s not how it works in her eyes. Every one of my diagnoses are on a spectrum and effect every person that has it differently, but instead of them trying to understand that, they just gaslight me and make me feel bad about bringing up my health concerns.

lochsleigh 2

Have them/your mom go to a doctor appointment with you and have your physician explain the various symptoms of diagnoses. Also, print out all the information you can find about them. And if that doesn't work, well you just have to reconcile that they are who they are. I lost my parents quite a while ago; long before any of this was diagnosed so it's been easier for me to cut off negative people but it took me a while to get to that point. Good luck.

AnonymousFruitSnack 3

Thanks, though my parents have gone to many doctors appointments with me and to the emergency room multiple times. I’ve sent them many articles about my illnesses. They are just who they are, as you said. It’s been years since my diagnoses and if they haven’t realized I’m not faking yet, then that’s on them.

crocheting_mesmer 9

I'm really happy for you as a fellow spoonie. Your boyfriend reminds me o my dad with the oblivious thing.

My dad actually had UC before he met my mom. When he realized they were getting serious, he told my mom, "Sometimes I shit my pants and it gets worse. If it helps, I can do my own laundry."

They've been married for 30 years and still act like PDA-loving college kids.

BalancetheMirror 6

If it helps, I can do my own laundry.

Ha! Your dad!

blueyedreamer 8

There's this adorable couple on YouTube. One girl has POTS, hearing loss, and iirc she's blind in one eye. The second two are due to a hereditary condition, and I cannot remember when her POTS showed up, but I think it was before she started dating her wife.

They're so adorable and they've done a few videos on what it's like for her living with an invisible illness, and what it's like for both of them as a couple.

There are definitely good people out there who will love us spoonies :)

benjai0 7

Thank you for sharing this! I was diagbosed (dismissively) with fibro around the time I met my husband and it took many years before my doctor found the underlying muscle disorder and I could get actual treatment, but he's always been wonderful. His mom has chronic pain so a lot of things were just obvious for him, like checking in on me and automatically carrying my bags and stuff like that. I feel a lot of guilt for not being able to do my share of the chores a lot of the time, especially when I'm working, but he never guilts me for it. I'm glad you've found someone great too ❤

PsychosisSundays 3

What were you diagnosed with ultimately? I was told I had fibro by one doctor but a specialist changed it to myofascial pain syndrome and a pain processing disorder. I'd be interested to hear about your experience.

benjai0 5

I have a genetic muscle disorder called Central Core disease. Took three years of investigation by a neurologist, I was having carpal tunnel-like symtoms so they did EMG/eNeG testing and something looked iffy with the muscles in my arm, and on further testing it showed up in all large muscle groups. Eventually they did a biopsy and saw that stuff was iffy on a cellular level in the muscles.

I have a relatively mild expression of CCD, meaning I made it to adulthood without overt symtoms. Have had pain all my life though, in addition to clumsiness and weakening of the ligaments due to the joints not getting support from the muscles. Especially my knees are weaker, I've dislocated the patella 4 times on my right side. It's mildly degenerative, so that sucks. It also means I cannot do even moderate excersising due to risk of injuries. When I'm good I do low-impact relaxation yoga for 20-30 minutes a few times a week. There's no specific meds or cure, and I have the wonderful luck of a super sensitive digestive system so just paracetamol regularly and a muscle relaxant as needed. Stronger pain killers do nothing but the muscle relaxants seem to work, but it's only been a month with those. Its mostly tension and the muscles not relaxing that causes pain for me.

I've done something called acceptance and commitment therapy though, and that's been immensely helpful. Learning to accept that sometimes I have shit days or shit weeks and being kind to myself. I also switched jobs, from something physical to something administrative, which has made a huge change in my life. I also should always add that I live in a country with socialised medicine and social services that allowed me to be sick for a while without having to stress aout finamces while this was all figured out, along with figuring out some mental health bits.

Sorry for the novel :,D

PsychosisSundays 2

Hey, just saw your reply. Thank you for the detailed response. I'm going to look into CCD as it sounds a lot like what's going on with me. I will also look into acceptance and commitment therapy as it sounds like it could be helpful.

RevolutionaryG 7

This is really inspiring!!! Thank you for sharing this - and congrats!

clairemct 7

As a visibly disabled person with CP (cerebral palsy), this post makes my heart so happy! All I ever hear are nightmare stories about dating while disabled, so it’s nice to know good people do exist. Best wishes for continued success in your relationship!

bibliophile6969 5

Omg! I never saw your original post, but if I had, I would have absolutely commented with my own story! For context: I'm a 25yo gal with a cool cane and a very rare bone/endocrine condition, which may or may not have led to me meeting my fiance.

Here goes: in the spring of 2015, I had my hip rebuilt. They called it a "complex hip replacement" on some of the insurance forms, bc they didn't know what else to call it. It was a little "innovative," and I'm not convinced they didn't end up throwing some carefully bent paper clips and duct tape in there. Apparently I'm in text books now. But anyway, it was a tough surgery, and I was still on crutches in by the end of the summer. It was my junior year of undergrad, and classes were starting next week. I was invited out by some new friends, who wanted to go to this dollar beer night event that one of the girls had heard about from a guy she liked.

So we walk into the bar, and I make a beeline for one of the stools. I set myself up, lean the crutches on the bar, and start looking for what's on draft while chatting with one of the girls. I hadn't even ordered my drink when, from the corner of my eye, I see a hand reach out and grab my crutches.

Now, this is one of my biggest pet peeves: I fucking hate drunk assholes stealing my crutches. I've full on yelled at people for doing this before. It's really not cool. So I start to turn around, and I'm preparing to tear this douche canoe a new asshole...

...and all of the sudden, I see the cutest smile I've ever seen in my life.

And now we're getting married in October, and he's the best thing that's ever happened to me. He's been almost completely cool with my flimsy ass bones since day 1 (I say almost bc sometimes he forgets I can't walk as much as he can). 2 years ago, he went to the doctor with me after I slipped and fell on some ice and thought I might have broken something.

And I, too, thought that I would have a hard time meeting someone who would put up with how "defective" I am. My mom used to tell me not to tell people about my condition until after the 3rd date. But here I am, planning a wedding with the man of my dreams. Life is an absolute trip.

So kudos to a fellow flimsy female, and congrats on landing another cool ass dude! Best of luck to you both 😉

I_LOVE_STAMP 5

I have Ehlers Danlos Syndrome and this means a lot to me just haven gotten out of an abusive relationship with a man who told me to my face my illness wasn't real and I was making it up. I've struggled a bit knowing that I'm not always going to be able to take care of myself and that a partner would have at least to be empathetic to that. I'm so glad you've found someone supportive to your pain. :)

heyitsharding 4

Thank you so so so much for this update. fibro and lupus destroyed my relationship and I’ve been single for 3 years. This really gave me hope x

Claefer 2

It's so easy to give up hope in such a dark situation. I know I did for a while! Gradually picking up the pieces of my life and trying to glue a new one together has been hard, but even though it doesn't look like the old version I had, the new one isn't looking too shabby anymore :) I hope you find success dating, even if it's just in enjoying new experiences!

Dartaga 4

Great update! Everybody needs somebody most of the time. What is a spoonie? If it’s ok to ask that?

benjai0 4

Spoonie refers to the Spoon Theory, if you google you'll find it. Apparently it even has a wikipedia page now? :)

Claefer 3

It's totally ok to ask- it's how we learn :)

A spoonie is a term that's used in the invisible illness community a lot, based on an article about "Spoon Theory" that I'm not allowed to link, but is easily googled. The basic premise is that someone used a handful of spoons as currency to explain how taxing small, everyday things are to her friend (e.g. Getting dressed, that's a spoon) and showing her how fast you run out of energy.

It's not a perfect metaphor, but it's a good starting point for explaining these conditions to totally healthy people.

Dartaga 2

I love your explanation! Thank you. I am a retired Nurse after 43 years, but I never heard this terminology before. Thank you.

Sister_Winter 3

What a heartwarming update. I have Cystic Fibrosis (invisible illness represent!) and definitely struggle with letting myself be vulnerable because I feel I'll be disappointed (and haven't been proven wrong). Thanks for reminding me it may be worth it!

Claefer 1

It's hard to be vulnerable when you already feel vulnerable due to a health condition - make sure you have a support safety net in place (like having plans with a friend, or crash night with your favourite film) planned after you know you're taking a chance like that. It helped me a lot by reminding myself I was seeking something extra that added to my quality of life, not any old person who didn't get it.

Lots of hugs your way, challenges are hard, but they can be so worth it in the long run. Even if it just proves you're made of tougher stuff than you think!

Sister_Winter 2

You are so right about having an outside support system, and also about viewing a relationship as a nice addition to your life rather than something contingent on your life being good. I think having a beautiful relationship this past year that ended due to geographic distance rather than my illness really helped me be open to the possibility.

Major hug to you too Spoonie sister!

ohsodelightful 3

I didn’t see your previous post but just wanted to say that I’m so happy for you. Your partner sounds amazing ☺️

casseroled 3

I’m so happy for you! As a teen with chronic illness this was really nice to read

harbhub 3

You sound amazing and so does your boyfriend. Many people struggle to empathize with invisible illnesses. It's great that he understands your personal context and makes adjustments accordingly. I'm happy for your success.

dogsonclouds 3

I’m in a super similar position to you and this gives me hope so thank you fellow spoonie. I’ve dated a few guys and one I thought was great but who dumped me because among other things, he just thought I was lazy.

I dated one guy who was great with my illness because his mother was severely disabled so
He really understood and it didn’t get in the way of our relationship at all. But we broke up a year ago and I have gone on a few dates and nothing has really gone anywhere. Then my condition got more severe and I wasn’t in a place where I could date anyone. Now I’m kind of ready to get back out there but god I’m dreading getting to know someone only to find out they think I’m just lazy or weak or faking it. So this post gives me some hope. I’m really happy for you friend! Xx

PsychosisSundays 1

Best of luck from a fellow chronic pain sufferer!

Claefer 1

I'm so happy this post gives you hope! I think hope is such an important thing when dating, because it gives you something to cushion the impact when things do go wrong and people aren't always nice about it.

I know how stressed and depressed I was when my health got a lot worse a couple of years ago, it's rough. Getting back on your feet can be a slow process, so do what you can and don't feel the need to rush it. It gets easier to pick up on who thinks you're lazy or weak or faking, and you can weed them out quicker. There are lots of great people out there. And some who might not cope with the health issues in a relationship context can still make great friends! I really do wish you all the best of luck xx

shelbysj 3

I’m so happy for you. I have fibromyalgia as well although I didn’t start showing severe symptoms till I had been dating my now husband for three years. It is great you found someone so understanding and considerate! This is a great update!

ladyredridinghood 3

Found my now husband 7 years after my fibromyalgia diagnosis. I also have bipolar. Didn't phase him when I told him. He's wonderful.

Inyeoni 3

There's this couple on YouTube that I love. Simon and Martina. They're happily married and traveling the world despite Martina having a serious, often invisible illness as well. She has Ehlers-Danlos Syndrome (EDS). I'm glad you're doing well, OP and I hope you continue to thrive personally and within your relationship.

catpants7 3

I have bad anxiety/ibs plus chronic pain and I feel ya. I've had boyfriends before my now-husbsnd who, at times, thought I might be faking how much pain I was in due to my condition(s) plus wrong medications. I never cared to try and change their minds but knew decent people usually try to understand. It just takes a bit longer to find someone mature enough. The struggle is real!

Quick question though....why are you called spoonies?

Claefer 2

It's based on a metaphor in an article that a lot of people with invisible conditions use to explain their condition to healthy people. If you look up "Spoon Theory" on google it should come up with it, but it's basically about someone using spoons as a currency to explain to a friend how taxing tiny everyday tasks are.

I personally prefer the faulty battery charger metaphor myself, but the spoon one caught on so much on the internet that I'm super used to the term Spoonie now :)

kapelin 3

What a nice post. I don’t even know you and I feel so happy for you. Thank you for sharing your story so that others in a similar situation may be able to find some hope and make positive change in their life. I wish you all the best :)

Nekayne 3

So glad to hear that you are doing well. I also have fibromyalgia so I am familiar with the pain and exhaustion that come with it, and I'm super proud of you for working hard to get out there and get social when it's just not that easy. Much love ❤

Claefer 2

Thank you so much <3 It's been really hard and I pay for the good days with a lot of bad, but it's overall made a massive positive difference to my quality of life, even aside from dating. I know how hard fibro is to live with, so I hope that you're doing okay! Do what you can, when you can and try to enjoy the things you're able to :)

smokeweedeatpussy 3

I’m happy everything is going well for you. It’s kind of cool that there’s documentation of your change in mood and life outlook.

If you don’t mind me asking, how are you able to live on your own money wise without your grandparents

Claefer 2

Yeah, it's interesting and weird at the same time to look back on!

I've been exceptionally fortunate in that my dad helped financially support the transition period while moving while my means tested benefits were processing, and I live with my brother who pays half of everything so it's much cheaper than moving out by myself! Money is still tight, but I don't have that many expenses with not being able to get out as much as I'd like (I don't drink either, which is cheap haha).

Unfortunately in the UK, the current government is not being very helpful in their policies towards disabled people (I had to wait a year at one point to appeal my non-means tested benefits decision. The assessor lied and said I should only score 4 points in one category which would mean no benefits at all, but tribunal quickly found out I should be enhanced rate for both because they actually looked at the medical evidence).

I know not everyone is in a position to afford this kind of thing, especially with many landlords automatically rejecting any tenants on benefits (disability or not).

smokeweedeatpussy 2

That’s awesome tho girl. You found a way to make it work and you did it!! Keep moving forward little by little

agent_philcoulson 2

Wow I'm really happy for you :)

panic_bread 2

I’m so glad you’re in a happier place!

breathcue 2

Thank you for this, it was encouraging for me. I'm a spoonie too and I've been carrying around a very bleak outlook on my dating future. I'm so happy for you and your new boyfriend!

imperi0 2

This is so good to see. I also have fibromyalgia, along with lupus. I look healthy, and fairly fit, but my body is such a mess. Having a partner that is supportive makes such a big difference. I don't know how I would get through some days without him.

ScottishVixen 2

Thank you so much for this.

I was just getting over a very painful divorce when I was diagnosed with a succession of three invisible chronic illnesses (including fibro). I’ve often felt that I’ll always be alone because no one will want to take me on with all my baggage (thank the ex for planting that seed while we were splitting).

You’ve given me hope and the courage to message a local gaming group about joining when the energy-sap that is Christmas is over. Thank you from one spoonie to another.

thatgirlwithamohawk 2

Im waiting for a fibro diagnosis, so this was a great post! Thanks!

fanaticus35 2

this is so comforting

WhiteWolfofUtah 2

What a wonderful story to read. Thank you so much for sharing. It's so great to see hard times work themselves out!

CalypsoGecko 2

Congrats! It sounds like you have found a wonderful partner, and you seem so happy with life now.

TsukasaHimura 2

Brava. Kudos to OP! So heartening to hear a happy ending.

pusskinsforlife 2

Thank you for sharing an update! I am so so happy to read you’re doing well and your bf sounds amazing.

I remember your post well. When I read it, I was just coming out of several years of suffering and isolation because of invisible illness. Your post and the comments inspired me to start thinking about dating. A few months later, I met the love of my life and now we’re engaged.

Claefer 1

Oh my gosh, this is so moving! Thank you so so much for sharing this with me! It's so hard to make a push towards dating when you've been suffering and isolate for so long, but I'm so glad my post could help support you even a little towards it. I'm really happy things have worked out so wonderfully for you and your partner <3

LynetteScavo78 2

Thanks for sharing this. I'm sure it is incredibly encouraging for everyone who deals with similar issues.

OddScallion 2

Hey OP, I just want to say that you made this happen. If you hadn't been brave and put yourself out there, you never would have met this guy. So kudos to you. A lot of us, myself included, could stand to learn from your actions. :)

countdookee 2

I love this so much! Your bf sounds amazing, I'm so happy you found each other <3

sagewolf28 2

This is an amazing and uplifting update! Thank you for sharing! Wish you both all the best!!!

bluenighthawk 2

Aww he sounds incredibly sweet!! I wish you two the best :) My best friend has fibro and hearing your update is very touching.

hammocks_ 2

this is really lovely! as someone with fibro who's now dating someone dealing with their own chronic pain, it's great to see success stories <3

-Knockabout 2

Aww, this is a really nice update. I'm not looking for a relationship right now, but as someone with a chronic illness that causes fatigue as well (though not so severe), this is really heartwarming.

littlewolfgirl_12 1

Congrats to you! If I had a chronic illness I'd probably just try and find someone who also had it, that way we could relate. May be easier said than done and things may have to be long distance for a while but that's what I'd probably do.

qualityKnight -2

Interesting, I read a woman's profile in a dating app who had the same condition and I didn't think of it as a red flag or turn-off. Maybe it was you, lol.

Claefer 1

It's great that you don't consider it a negative! It probably wasn't me though, haha, I haven't been on any dating apps since I met my current guy a few months ago :) I didn't disclose it in the bio either actually, because I found it was easier for me personally to disclose it in person, but different people have different approaches!

esterbot

As someone with MS who is currently single and dating, thank you for this.

knokking

Hi.
I just saw this update and read your original post.
My ex-gf was diagnosed not with Fibromyalgia but "whole body psychalgia" which has very similiar symptoms so I wanted to share some of my experiences (partly because I'm still emotionally attached and haven't had anybody to talk about some things and partly because I hope knowing those things might be beneficial to you as well).
But first I want to ask you something: "Who are you? And what are the first adjectives that come to your mind when you're trying to describe yourself?"
If "I'm a disabled person" is one of those things - I can completely understand it - but please for the love of yourself try to change this - because it's you that defines yourself as being disabled. I know this might sound crazy at first but in hindsight this was one of the things that my ex changed during the years we were together and it helped her quite a lot in handling stressful situations. Because, well, if you define yourself by the things you cannot do and stopped trying to do them altogether what kind of life will you look back upon after managing to cope with your illness for (hopefully many many) years?
Back to the things I learned while being together with her and after she broke up with me by giving an example of her changes in behavior: I love dancing (especially to electronic music) so before we came together I would go out clubbing every weekend. At first she was hesitant to go out with me together because she knew she couldn't dance for more than 20 min or so but she tried and we had a blast together. So she tried again and again and again and 20 min became 40 and so on. Until one day when some ******* drunken dude decided it was okay to grab her *** which threw her off immensely (the underlying cause for her psychalgia was sexual trauma during early childhood). After that I never asked her to go dancing with me again. Why? I'm still not quite sure yet but I believe its partly because I was "pre-emptying issues before they even have a chance to come up" as well, since I thought she wouldn't want to come with me again but I also knew that she would become jealous if I were to go out clubbing on my own and I didn't want to put her under any pressure / stress since I didn't want to hurt her (quite literally lol). I kept up with this on many more things and during the years I started to become an empty shell a mere shadow of the person I was once we met. I know that most of this was because I didn't value myself enough and wanted to commit my life for the benefit of another (awesome) human being. In hindsight this was also the beginning of the end of our relationship: while she became a more and more outgoing person, started making friends, going into politics, getting a job working with disabled children I had stopped meeting most of my friends, couldn't get myself to finish the last pages of my final thesis or doing anything else besides working (for "us"), doing the household (for "us") etc. This was 100% my own (faulty) behavior ofc I tried to keep up with a self-image which was impossible to keep up (I told her very early during our relationship where she was freshly diagnosed and it seemed like the pain would get progressively stronger that I would care for her forever no matter what and could never break my promise even if I knew I was young naive and madly in love when I gave it to her) but while she noticed that I became more and more detached she didn't ask for the reasons (I guess she was too afraid of an answer like "I can't manage being together with a disabled person any longer") when the "correct" answer would have been "I can't manage the way I'm trying to manage being together with a disabled partner any longer" and that would have been something that could have been worked on and might have been beneficial for the both of us.

Tl;dr: Having a partner who pre-empts issues is great but if you ever have the feeling that he is doing this more than necessary or than is good for him tell him asap.